I'm OK to go!

So, on Friday I headed over to San Francisco for my radiation simulation. They put my mask on, locked me in, the techs left the room and shut the crazy heavy door that protects them from what I'm getting (?!?), and they took a CT scan of my head. All this is to make extra sure they laid everything out just right and nothing is going to get radiated that shouldn't get radiated. After the CT, my radiation oncologist took a look and says everything looks excellent. Now I'm good to go ahead. I will be starting my radiation treatments on Monday at 3:30. So everyday for 2 weeks I'll head over to UCSF for a quick dose of cancer killing radiation.

In the midst of all this I went to see my medical oncologist on Tuesday and it looks like the cancer in my breast is growing back. She suggested I go back on Herceptin for now and see if it does any good. Normally they don't want you taking anything while you're on radiation, but Herceptin is so benign I got the go ahead. The great thing about my doctor is that she has a plan- We'll keep an eye on things after radiation and if Herceptin isn't keeping things in check, we'll add Tykerb back (at the normal dose so I won't be so sick). If those two aren't doing what we want she has a clinical trial she'd suggest I try. I love having a plan (although we all know the plan is subject to change at any moment).

For a second here I'm just going to complain: Sometimes dealing with cancer itself is easier than dealing with all the stupid crap surrounding treatment of said cancer. I went to work on Friday, ran out of my last class and jumped into a waiting car (driven by Keith) to head for my radiation simulation. I didn't have any options for my appointment time (urgh!!) so I had to be there on Friday at 1:30. The nice part is that traffic was favorable on the trip over and I was out of there by 2:00pm or so, not bad! I had my appointment for Herceptin across town at 3:30, so we headed over there to see if they could get me in earlier but no dice! No problem, we grabbed a bite to eat and headed back around 3:00. At 3:30 I got pulled in for my infusion only to be told that they don't have an order for the infusion, ugh! So, they call and try to get this sorted out, and Keith and I spend (are you ready...) 3.5 hours in the infusion room. Now, 90 minutes of that is the actual infusion part, but still!?!? Ugh. I hate shit like that. Oh, and to make matters worse, while I'm sitting there waiting I got a call from the woman who helped me schedule an ultrasound (to get a baseline of what is going on in my breast). She says I can't just get an ultrasound; I need a mammogram too. Mammograms are unpleasant to say the least and I've had 3 in the last year, why do I need another when I can point to the problem area!?!? Oh, and this process takes for fucking ever! I never get in and out of the mammogram/ultrasound office in under 2 hours (tests only take 30-40 minutes). So now that I need two tests, I can't get it done before my radiation appointment unless I take time off from work (which I am loath to do with my sick day count dwindling away). Needless to say I was one cranky person, I don't know how Keith put up with me!

Just in case all this wasn't interesting enough, Red has been keeping things interesting... Last week Red had to have a tooth pulled (after an accident during a game of fetch). While he is recuperating he can't play with tennis balls (a big deal for a ball obsessed dog) so Keith was playing with him with a balled up bandana. Seems safe enough, but Red ate the bandana...So another trip to the vet and Red was sent home with orders to monitor him closely. Everyone is hoping the bandana will come out the other end, but there is a chance it will block things up and then he'll need surgery!!! Ugh. We're watching him carefully and so far there's no sign of the bandana, but he isn't showing any signs of sickness either, so no surgery yet.

Decision Made

I chatted with my medical oncologist today and she had already spoken with the radiation oncologist and was ready to give me her opinion on what to do. She suggests that I avoid whole brain radiation because, and I quote; "I expect you to be alive for a long time" and she wouldn't want my quality of life to suffer as a result of the cognitive problems that arise after whole brain radiation. The radiation to the posterior fossa will "clean up" anything that is left over after surgery and then they'll monitor me closely and use gamma knife to zap anything that pops up later on. I really needed a doctor to give me their opinion and their reasoning. I wish I had pushed the radiation oncologist to do it when I saw her, but the reality is that I have more history with my medical oncologist and would have wanted to talk this over with her anyway. So long story short, I'll be going ahead with radiation to my posterior fossa (back of the brain). The next step is scheduling and I'm hoping that I'll get a call tomorrow to get that started...

Decisions, Decisions

So I went to see the radiation oncologist today (poor Keith stayed home - all this crap is finally catching up with him and he caught a nasty flu bug). As usual, I recorded my appointment. This probably seems weird to all of you, but it is really helpful to replay some of my appointments afterwards and get some of the nuances. This time is was more important than usual since Keith wasn't there and because I have options. The radiation oncologist was very pleasant and laid out the two options for me.

Two weeks of whole brain radiation is the standard of care for my situation. The upside of this is it should kill off any micro-metastases in my entire brain. The downside is that it can cause a certain amount of short term memory problems.

The other option is two weeks of radiation to my posterior fossa (the back and lower portion of my brain). The upside of this is that it won't cause any short term memory problems. The downside is that if there are micro-metastases in the top/front of my brain they won't get cooked.

If I choose the latter, I'll be very closely monitored so if anything new "pops up" they can zap it with a targeted beam of radiation (cyberknife). I've relistened to my conversation with the radiation oncologist to try and figure out what she thinks is the best option and I can't quite tell. I hate it when doctors don't just tell me what to do! They're the ones that went to med school!?!? How the hell am I supposed to decide? I guess I should have just asked her straight up what she'd recommend (maybe I'll do that...). In the hopes of getting some guidance I've emailed my medical oncologist to see what she thinks. In the meantime I'm going to sleep on it and maybe I'll come up with more questions for the radiation oncologist.

In other news, Keith and I had a great day trip to Yosemite on Saturday. It had snowed there during the week, so up in the high country there was still a lot of the white stuff. The views were amazing and we even squeezed in a quick hike in the snow! Here's a shot of my scar with some of that gorgeous scenery.

I went back to work part time last Wednesday. I wasn't sure it was the right thing to do on Tuesday night (I had gotten used to laying around), but it felt good. It's nice to be just part-time while I recouperate and figure things out, but I think after this week I will go back to full time. It sounds like I can work through the radiation treatments pretty easily and they will work with me to create a schedule.

There is some big news on the in-law front! Keith's mom and dad made it home for the weekend!! This is only the second time they've been home since this whole nightmare started back in April. From the sound of it, things went smoothly, although it was a lot of work getting all moved out of the hotel. They've headed back to Duluth for a week of speech therapy and doctor's appointments, but hopefully they'll head home again next weekend.

Stitches Out

So, it has been almost two weeks now. I had a nice week last week with my mom, she drove me around and kept me company. I wasn't the most fun to be around (steroids make me a cranky thing), but she was a great sport. At this point, I'm feeling pretty normal physically. My neck is still a little stiff and I still have a hard time getting comfy at night, but sleeping is getting better as I ween off the 'roids. I'm looking forward to being all done with steroids by the end of the week. There may well be more in the future with the radiation, but I'll deal with it when it comes.

Keith and I headed to UCSF today to see the nurse practioner who works with my neurosurgeon. She took out my stitches and answered some questions for us; I have a couple of titanium plates in my head. They cover up the holes they drilled in my skull and keep things all in place. She also told me that I am ok to drive (yippeee!) and I can go back to work part-time (although I need to be careful not to overdo it).

The next step is to see the radiation oncologist in a week. She will talk us through her recommendation. There are several different possibilities as to how to proceed with radiation and from what I read there is a lot of debate about what the best approach is. Of course the approach will be tailored to my specific situation and I have to tell you I'm really curious to hear what the experts at UCSF recommend!

OK, so here's a photo of my frankenstein like stitches...I'll spare you the more bloody pictures when I still had a drain in.